I’m coming up with new ways to manage my pain without complaining

When you live many years with a disability like spinal muscular atrophy (SMA), as I have, you get used to pain and discomfort being a part of your life.

My pain isn’t as severe as that of some people I know, so I’ve never needed long-term treatment for it. But it’s always there, mostly in my shoulders and lower back because of my scoliosis, but my neck, legs, knees, and feet can also be affected, depending on how I’m positioned or what I’m doing.

Then there are those days when I wake up and everything hurts, which I’m aware is just a normal human issue. But that’s when it feels nearly impossible to get comfortable and perform independent activities of daily living.

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Go to ‘glow’ first

Now, with that established, one of my ongoing goals for self-improvement is to complain less. It really is a waste of energy and oxygen, and no one likes to be around a complainer. Plus, I find that the more I complain about something, the more that thing becomes the focus of my attention, instead of the things that truly matter.

I want to be a cheery, gracious, and thankful person, so when my morning alarm goes off, that is what I pray for. I know, however, that I cannot and should not fake bliss or deny that my pain is present. How would I be able to sincerely and vulnerably let my caregivers know important details of my comfort level needs without complaining?

I wrestled with that question this week and came up with a couple of ideas to help me be mindful of the difference.

When I was in college studying for my teaching degree, I learned to approach student evaluations with “glows and grows.” This means that, as teachers, we should start the conversation with a student by pointing out something positive, and then follow up with a constructive suggestion for improvement.

So I have decided that my interactions with others need to intentionally begin with a “glow,” even first thing in the morning, before a single negative thing can cross my lips. It can be a compliment to my caregiver, a praise to God, an acknowledgement of my own good health, or a general carpe diem-type declaration: “Today will be a great day!” Doing this will help it become my “default,” rather than dwelling on what is wrong.

Being a seeker of solutions

I think a key way to turn a complaint into something more purposeful is to not just state the problem, but also offer a solution: “My knee hurts. Maybe it will feel better if you bend it more and then slowly stretch it out.” Or, “My shoulder feels so tight today; would you rub it for a few minutes so it can loosen up?”

Sometimes I’m frustrated by my own discomfort and too tired and weary to think clearly. In those moments, it’s a good idea for me to invite my caregiver to help me come up with a solution: “My back is so sore I cannot sit up straight. I don’t know how to fix that, but I need help getting stabilized in my seat.” They might try adding cushions or shifting me around until we get a better result.

Staying focused on creative solutions is important to me because it helps me avoid wallowing in misery and dragging others into it with me. I hope that by practicing these habits regularly, my pain management will improve, along with my attitude toward my disability, my community, and the world around me.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.